-
Alex Raben: [00:00:00] Hi, listeners, this is Alex. This episode on Autism was recorded prior to the COVID-19 crisis. Before we jump into the episode, we wanted to take a moment to recognise the extraordinary efforts of the global community, which has come together to face this pandemic. This includes the tireless work of medical learners like you from around the world. Thank you, guys. Not just for listening, but for the service you're providing people in need. Stay safe and keep well. We plan to continue to make episodes to the best of our ability in this trying time, and we hope you will continue to listen. In addition, we've added to this episode's show notes an additional resource for how to help people with autism during the COVID-19 crisis. In less serious news, this episode had some technical difficulties and so you will notice a drop in the audio quality in the last 10 minutes or so. We apologise for this, but felt it was more important to release the episode blemishes at all than to not release it. As always, we hope this episode will enrich your learning.
Alex Raben: [00:01:18] Welcome to PsychEd, the psychiatry podcast for Medical Learners by medical Learners. I'm Alex Raben. I'm a PGY-five in psychiatry at the University of Toronto, and I'll be the host of this episode. And today, we're going to be learning all about Autism Spectrum Disorder from an understanding of what it is to how we can help people with this condition. I'd like to introduce the panel to you, the people joining me in the room today. I'll start with my co-host, Sabrina Agnihotri, who is a PGY one.
Sabrina Agnihotri: [00:01:50] Yes.
Alex Raben: [00:01:52] Excellent. And but Sabrina also has a PhD where she studied Fetal Alcohol Syndrome and so has some background in neurodevelopmental disorders. And she'll be bringing that expertise to this episode today as well. And then to Sabrina's right, we have Dr. Mitesh Patel, who is a child, as well as a forensic psychiatrist at Camh, and he works with young offenders, homeless youth, as well as people with neurodevelopmental disorders. Do I have that correct, Dr. Patel?
Dr. Mitesh Patel: [00:02:28] Yes. And also in the adult forensic system as well.
Alex Raben: [00:02:31] Oh, great. And then to his right, we have Dr. Yona Lunsky, who is a psychologist who works also at Camh, and she is a Professor of Psychiatry and actually has done a number of teaching sessions for my cohort of residents. And we've certainly appreciated those and wanted to get her on the show. She also does research into various neurodevelopmental disorders, including Autism Spectrum Disorder. So welcome, Dr. Lunsky.
Dr.Yona Lunsky: [00:03:03] Thanks. Happy to be here.
Alex Raben: [00:03:05] And last but not least, we have Dr. Melanie Penner, who is a developmental paediatrician from the Holland Bloorview Hospital, also here in Toronto. And she is a clinician educator, so she wears a clinician as well as a research hat. And in both those worlds, she works with people with autism. And in her research she works specifically looking at the services and program evaluation around Autism Spectrum Disorder. Welcome, Dr. Penner.
Dr. Melanie Penner: [00:03:35] It's great to be here.
Alex Raben: [00:03:37] All right. So it's wonderful that we have such a panel of experts this episode. I don't think we've ever had so many in one room. Just just to give everyone an idea of the scope of this episode. I think it's important that we go through today's learning objectives. So for this episode, by the end of the episode, the listener will be able to, number one, have an understanding of the neurobiology and epidemiology of autism. Number two, be able to tailor their diagnostic interview for autism spectrum disorder in a way that improves the accuracy of their diagnostic assessment, as well as being empathic and aware of issues in this condition. Number three have a familiarity of the impact of autism spectrum disorder on the people with this condition, as well as their families and the interdisciplinary and bio-psychosocial approaches involved in caring for people with autism spectrum disorder. So with that in mind, I'd like to start off first by getting a sense of this condition. And my first question for all of you is what is autism spectrum disorder? What does that mean? I know it's a DSM diagnosis that's in the Neurodevelopmental chapter, but if we can, without going into diagnostic criteria, is there an easy way for people to understand this condition? Is it one thing? Is it multiple things? I'll leave it there and maybe we can start with you, Dr. Patel.
Dr. Mitesh Patel: [00:05:10] Yes. Autism spectrum disorders is really an umbrella term. What that means is that it captures a lot of different kinds of presentations or ways of thinking. And the way that I like to think about autism and explain it to parents, for instance, is that autism is really a different way of thinking, a different way of seeing the world. And sometimes that way of seeing the world can lead to incredible strengths and talents and abilities that no one else could even ever have or fathom having. And at other times, it can lead to difficulties both in interacting with others. So some of that social communication stuff, but also sometimes there's some behaviours like repeating certain sets of behaviours or really being really focussed on certain things. And at times individuals who are diagnosed with autism can face incredible challenges.
Alex Raben: [00:06:03] Right. I'm wondering if other people on the panel wanted to add to that definition.
Dr. Melanie Penner: [00:06:08] It's so interesting. I had kind of jotted down some notes that said so many of those same things. So just a different way of. Interacting with the world. Thinking about both inputs and outputs in that different interaction. So inputs can be difficulty with the sensory environment that can cause a great deal of distress for autistic people and then outputs that may look a bit different than what we may be used to seeing. So different ways of expressing things like joy by, say, flapping your hands and jumping up and down different types of outputs in terms of how autistic people engage with other people.
Alex Raben: [00:06:51] Is there a preferred way of talking about this condition.
Sabrina Agnihotri: [00:06:56] Even referring it to a condition like like do you guys have any feedback for us and our listeners in terms of how that language comes across to you, too?
Dr. Mitesh Patel: [00:07:08] Yes. Yeah. I think it's immensely important that we stay away from labelling people according to their diagnosis. And something that I've often pushed for and tried to do within my own practice is not label individuals as like this is a schizophrenic individual. For instance, we might say this is an individual who has been diagnosed with schizophrenia in the same way when it comes to autism. I think it's really important for families and patients in particular to hear that, that there's a difference in learning. We term this autism. There can be a difference in terms of how they interact with the world. And I tend to try to stick to an individual who has been diagnosed with autism or has met criteria for autism versus saying the autistic individual.
Dr. Melanie Penner: [00:07:48] So I'm going to kind of jump in with some some things that I've learned from listening to the autistic community. And you'll notice that I'm tending to use identity first language a little bit more. And that's something that I actually picked up from actually Twitter, from listening to more autistic self advocates who at least for some of them really find something important in claiming that autistic identity for themselves and to acknowledge that it kind of it impacts their whole state of being. I think the approach I'm taking in a clinical environment, particularly when now I'm dealing with youth or young adults, is to actually ask them what their preference is for me to refer to their autism. And so some don't seem to have a preference. And then those who seem to be a little bit more kind of in that savvy community of thinking about disability and how autism kind of interplays with their life and society. A lot of them are kind of requesting identity, first language.
Dr.Yona Lunsky: [00:09:07] It's so interesting, right, because we really do hear different things from different people. So I would agree with this idea of, you know, talking with people to see what they're comfortable with. But even how we talk about it outside is going to make a difference to people. And I know I've also made a shift because I work primarily with adults to use identity first language around autism. So to talk about autistic people and then, you know, families would be like, well, why? Why do you do that? You know, or like clinicians, what do you doing? Like, don't you realise like and it's like actually I do and I'm now going and so so educating people say you may notice, right? So sometimes I'm going to say autistic people. And that's because some people have said they really have a lot of pride in their autism. They're really excited about that and they've asked us to speak in that way. We don't feel kind of, but that's okay. Whatever works for you, I will do that. But that's why I sometimes use that language. So kind of helping people to understand different perspectives. And I think with families too, even if their families have younger kids, just encouraging them. There's so much interesting literature now to read about that people are writing from their own voice. People who identify as being autistic write about what these things mean and why they're using that kind of language. So some nice things, I think that residents are clerks could just be reading to sort of get more aware of because it's changing. It's I think it's even different from two or three years ago. Certainly is different than six years ago. And it may be that in two years we're having a different conversation again.
Alex Raben: [00:10:28] So right. So much nuance there I'm hearing and a couple of different types of terminology that may be preferred by different people. And so it's really just important to be aware of these issues, check in with people and keep up with this as well, because as you say, it can change over time. With all of that said, there is this standard definition that we do have in the DSM five, and I'm wondering if we can work through that, because although as we've clearly spelled out here, this is not just about a DSM five diagnosis like with any of these diagnoses, we're talking about people who are very multidimensional. But we also use the DSM five as an important tool in our practices. And so I think it is important for us to unpack that for our listeners who are going through this large diagnostic manual in their clinical rotations. So can we talk a little bit about that? What is the DSM five criteria? How does one meet that? And then I think we can also get into how we actually ask around that and make the diagnosis.
Dr. Mitesh Patel: [00:11:40] In my work in forensics, it's actually really important that we know these criteria quite well because they do end up coming up. And I think for all of us they come up quite a bit and just knowing. But I think what's really important to remember is that when we're talking about developmental disabilities or neurodevelopmental conditions, in this particular case, autism, it's important to remember that this stuff starts in childhood. Early childhood, there has to be evidence of symptoms or concerns that come from the early childhood period. So some may come to their family doctors later in life or to their paediatricians or even to nurse practitioners or whoever else they might be meeting and say, Oh, I think I might be autistic. That often takes a long assessment. And really going back to interview biological family members, for instance, to find out what could potentially be going on there. So I believe that that's criterion C is that the symptoms are present from early childhood. Criterion D is that there is this impairment to functioning on an everyday basis. And so that is important as well, that this is not something that just simply goes by and it doesn't cause any impairments. I think the other two criterion I believe are much more important being criterion A and B, and I imagine others can speak to this much more.
Dr. Mitesh Patel: [00:13:02] But just in brief, the first criterion or criterion A is difficulties with reciprocal social communication and social interaction. What that means is that there's this general difficulty with understanding other people's emotions, having difficulties expressing their emotions, or being able to communicate in that context. And the second criterion or criterion B is that there's a restricted or repetitive patterns of behaviours, interests or activities. And so that could involve stereotypical or repetitive behaviours, highly restricted or fixated interests. And this is really why a lot of children come to clinical attention for us, I would say, is that that's one of the main challenges, at least in my practice, that I see a lot of. But also just in terms of the social reciprocity and understanding what's going on there, I would also point out that in autism, there's a lot of advancements that have been made in terms of identifying the severity of the illness or if we call it an illness or the condition. And I think that's really important is that things have changed so that now we're actually identifying them by how impaired the individual mate might be.
Dr. Melanie Penner: [00:14:17] Yeah. So. So I think within those kind of big A and B criteria. So, so there are two main domains of symptoms. So the first one is that social communication. So within those there, there is the sort of social emotional reciprocity. And like Natasha was saying, that's a lot of like the back and forth interaction piece. So kind of reading the situation appropriately and responding in the way that is generally expected. There is difficulties with nonverbal communication. And it's interesting because when I'm seeing young children, it's often the verbal communication that is presenting as the main reason for concern. But then as we look into it there, it's a broader difficulty with communication. So not only is perhaps the child not using their words to communicate yet, but they may not be using other strategies as well. And I see a lot of parents who are sort of doing a lot of guesswork about what it is their kids are trying to ask for. So within that nonverbal category, we're looking for things like eye contact pointing, use of gestures like nodding or shaking your head, you know, your use of facial expressions. Are you expressing how you're feeling on your face and beyond that? Are you also directing that to another person? And then the third criterion within that kind of social communication group is the development of relationships.
Dr. Melanie Penner: [00:15:55] So there we're looking at the earliest relationships being the caregiver relationship. So how is the child pulling the caregiver sort of into play, their siblings perhaps into play, whether they're doing that rich, you know, back and forth, imaginative play. And then as they are getting older, how they're developing peer relationships. So I think it's important to note as well within those social communication criteria, there are lots of things that can give you social difficulties. So autism is not the only one, but it is certainly one of the the ones you should be thinking about if you have a child who's presenting with those difficulties and then, yes, the restricted repetitive criteria. So that's where we see the some of the what we call stereotyped behaviours. So that's where we see things like lining up of toys, flapping of hands, repeating speech. We can see insistence on sameness. So kids who really want things to be like the same way every time, difficulty with transitioning from one thing to another. We can see intense or unusual interests. And so kids who get really obsessed with something and then those sensory difficulties that we've already sort of alluded to. So those can be both things that are extra alluring from a sensory perspective or things that are really aversive from a sensory perspective.
Alex Raben: [00:17:28] What I've heard and I'll just summarise sort of the criteria that I heard, which were these two big domains of what we might call a criteria, social deficits or difficulty with social communication or a difference in social communication. And then B was, which was restricted in repetitive behaviours that it had to be impairing and that it had to start in childhood, that this is a neurodevelopmental disorder, it starts young. How do we conduct ourselves in the interview that allows us to make this diagnosis? Does that involve collateral? Does it? What are the components of an actual diagnostic assessment?
Dr. Melanie Penner: [00:18:08] So to me the it you definitely need input from various sources so your history with the people who know that person best including perhaps that person depending on how you know what their age and developmental level is and and how they are able to contribute. I think collateral information is almost always helpful. Some of my really young ones who aren't in Day-care yet, it's, it's hard to get collateral information but once they're in Day-care or school, that's really, really helpful information because that is for children and youth, their sort of main occupation. So we definitely care about how they're doing in that environment. And then there should be some form of observation and interaction. And to me, that's so, you know, watching the child or youth is not really enough. They're you. You do need to be able to interact with them, whether that is with a standardised tool or otherwise and to to see what that interaction feels like. I think it's interesting though, sometimes you can have the effect of being a very good playmate. And I'm thinking of one case that I had where, you know, very bright boy who loved the idea of talking to an adult for an hour, like just loved it, and then afterward asked if I did birthday parties. So. So sometimes we can. We can accidentally select for making things. Things seem a bit rosier than they might in the real world. But those are generally the main components that I would think about.
Alex Raben: [00:20:11] And you also mentioned Scales. We had a listener write in with some questions. And actually, Connie Lutton, I hope I'm pronouncing that correctly. She's a social worker who works here at CAM in the Slate Centre. And one of her questions for us today was whether there were brief scales people could administer as a way of screening for for autism.
Dr. Melanie Penner: [00:20:34] So there are definitely, I think, of the tools in a few different buckets. So there are screening tools. There are screening tools that are based on questionnaires and then there are a few for really young kids that are based on a short interaction. And then there are diagnostic tools and again there are diagnostic tools that are more based on a questionnaire or interview, and there are some that are based on an interaction in terms of the diagnostic tools we are often thinking about. So in the interview sort of category, there's the autism diagnostic interview revised, which is fairly lengthy takes, you know, and does take a lot of training. But if you are looking at something that's that's sort of considered among the most reliable tools, that's what you would be looking at. And then for the observation and interaction sort of part of diagnostic tools and that the sort of main one that people often think of is called the AIDS or autism diagnostic observation schedule. And that one definitely takes a lot of training. You need very specific materials for it. It's important to know that depending on where you are making your diagnosis, you may or may not need specific tools to make that diagnosis. So where we are right now in Ontario, you do not need a specific tool to make a diagnosis that differs quite a bit if you go to a province like B.C. so it's important to know where you are and what the eligibility requirements are for diagnosis so that kids and families can access services based on how you've done the diagnosis.
Dr. Melanie Penner: [00:22:20] Probably the most important point here is that you're not going to find a score or a number that's going to make or break this diagnosis. It's a clinical diagnosis. And though I think the temptation is to find these ways to put to attach scores and numbers to it at the end, it's still based on clinical best judgement. And, you know, different types of cases may require different levels of kind of testing and kind of semi-structured interactions and things like that to come to that diagnostic conclusion. But at the end of the day, it's not based on a number, it's based on really rich information of that child, their context and support. Sorted by what you've seen in your clinical environment with the caveat, I would say that, you know, we do these clinical assessments in a strange place, like we make people come to a clinical place. They have to play with a strange adult. And so and I think we need to be aware of, of that limitation, particularly when we're kind of coding and scoring these types of interactions as well. That context is really important. And so I always try to really prioritise the descriptions of that child in the real world, recognising that my ability to kind of mimic that in my clinic is going to be limited even though I am a good playmate.
Alex Raben: [00:23:58] So what I'm hearing is that there's no replacing an actual clinical assessment and if there's a suspicion, there are tools available to you. But ultimately, someone probably needs to assess in person, get an A, get a fulsome assessment. I think part of why Connie was asking this question is she works at Slate, which is a centre here at CMS that works with people who have early signs of schizophrenia. And she was explaining that oftentimes it's not clear to her whether the person in front of her has actual schizophrenia or may be developing schizophrenia, or if this is more of an autism spectrum disorder. I'm wondering, are there other things that mimic ASD and what are they what do we have to look out for when we're trying to narrow down the diagnosis?
Dr. Mitesh Patel: [00:24:47] There are many other, many other conditions that can sometimes be confused for aspects of autism or presentations that they might have. Going back to what was mentioned about schizophrenia, autism can be comorbid with schizophrenia. That is incredibly important to remember. And when that happens, the presentation is can be very complex and it can be a bit more difficult to tease out what is psychosis versus what is an underlying interest that an individual may perceive it upon. Does that meet criteria for a delusion? Is there an aspect of paranoia tied into that? Are these things then connected? And oftentimes they are all connected, so it's really difficult to put people into these neat boxes.
Dr.Yona Lunsky: [00:25:37] Are there certain symptoms that you guys can think of from your practice that jump out to you as the most distressing to a patient?
Dr. Mitesh Patel: [00:25:45] Absolutely. I think one of the most difficult challenges for many youth, at least with autism, is bullying. And as soon as you start mentioning that question or raising aspects of it, the first thing that comes to mind is youth who are bullied for being different or not understanding what other people are trying to communicate and being subject to extreme amounts of bullying. But that's something that comes to mind. I'm not sure if that was your question, but yeah, no, that's what I that's what comes to mind for me is that that's one of the most distressing things. And OCD is very comorbid in terms of autism. And so there can be a lot of distress with having to keep that sameness, as was mentioned. And also a lot of the anxiety symptoms that come along with that.
Dr. Melanie Penner: [00:26:35] Yeah, I agree with all of those. The only other thing I would add, I think, is that the sensory symptoms can be very impairing. So for people with a lot of sound sensitivity, going out in public can be hard. Using a public washroom can be really hard between the like automatic flushing toilets and the like blasting hand dryers. There are lots of parts of the environment that are just not built with the needs of autistic people in mind.
Dr.Yona Lunsky: [00:27:09] Yeah. Even just, you know, your regular kid's birthday party with all the screaming, the happy birthday and the terrible thing that happens at the end of the happy birthday singing, which is the applause, you know, with the blowing out the candles and kind of that sudden like that is very jarring. So then you don't want to be at a birthday party, right? Or then you don't want to go to a sports event or all kinds of things that are really, really difficult.
Alex Raben: [00:27:31] Right. So quite a number of aspects of the illness can have can evoke distress. And part of it also seems to be at times the mismatch between people who we might call neurotypical versus people who have autism spectrum disorder, focusing on this sort of neurotypical word. I'm wondering if we can take a step in the direction of understanding the etiology of autism spectrum disorder. And I imagine this is there's a lot of question marks out there still. But what do we know about the differences in their brains and and how this and how this condition comes to be?
Dr. Melanie Penner: [00:28:14] Lots of looks around the table.
Dr.Yona Lunsky: [00:28:16] This one was the one cause of autism.
Dr. Mitesh Patel: [00:28:20] I think if we knew that, we wouldn't be here.
Dr.Yona Lunsky: [00:28:23] I was just going to say, I mean, I think it's really a cluster of symptoms or characteristics with so many different aetiologies. So we're learning more about those things. We no longer think, for example, that it's caused by how mothers raise their infants or their children. Right. So the refrigerator mother kind of phenomenon, we recognise that's not true and we know there's a certain biological sort of component to it, but it's not, it's not as clean cut as maybe we were hoping as we sort of advanced all of our, you know, expertise around understanding things like genetics and, you know, the sort of the actual anatomy, what's going on in the brain itself. It doesn't always look quite so different from some other neurodevelopmental condition.
Dr. Melanie Penner: [00:29:08] Yeah. So, I know some of the people who are doing the kind of cutting edge biological exploration in this area are starting to say things like the autism's so is autism as we know it really at a biological level, more a collection of rare disorders that present in a similar way from a from a behavioural perspective. And then the concept as well of neurodevelopmental disorders. I mean there are very fuzzy boundaries between our diagnostic buckets as we've already discussed. Right. Kids don't fit neatly into one bucket or often even two buckets. And so there's also a lot of work going on right now to re-examine these diagnostic categories that we've created and say, well, do these actually really hold up if we put them under scrutiny? And so I think of my colleague of TYCHE and agnostics work with the Province of Ontario Neurodevelopmental Disorders Network platform where they are. This is exactly the question they're taking on. They're saying if we take if we enrol a whole bunch of kids with various neurodevelopmental disorders, run them all through the same sort of phenotyping platform and look at their underlying biology, what would this tell us about the integrity of our diagnostic constructs? And so far, the results are showing that there is that the borders that we've constructed are quite hazy between these conditions.
Alex Raben: [00:30:50] Right. So there's I think although we're in the early stages of understanding the ideology, it seems like it's really ideologies at this. From what we understand at this point and a lot of that understanding comes from genetic testing and things of that nature. Is there a role for that kind of testing diagnostically today? Is there a role for other types of testing in our assessment of someone with potential ASD?
Dr. Melanie Penner: [00:31:22] So right now genetic testing in the form of chromosomal, microarray and fragile x testing is offered to families post diagnosis. And so we're not using it at this point to detect autism. It will be interesting to see, I guess, how the field develops that way. Right now, though, it's used, is more to see if we can find an underlying genetic condition that is that we think is associated with the autism. And there are various results we can get along those lines and a lot of grey areas. So. So I counsel families that it's generally about a one in ten chance that we're going to find something associated with the autism. When we do that testing, sometimes we get a genetic mutation back and it's a variant of uncertain clinical significance. So we don't know what that means. It hasn't been described in the literature as being associated with autism. And then sometimes we get a normal result, which may mean that there's not anything that we can detect that is that is a mutation. But it also may mean that just the type of testing we're doing right now, which is microarray testing as opposed to like a whole genome or whole exome sequencing, is not picking up things that a granular level that we would be able to find otherwise. So it's going to evolve and it will be interesting to see where we move as a field.
Dr.Yona Lunsky: [00:33:07] Yeah, I was going to just say it's still, I think, a really important message, you know, for clinicians that it is good practice to figure out, I think, if there is a cause, what it is because with certain things like for example, let's say it's fragile X and we didn't pick that up before. Well, we know a lot of things about people with Fragile X. We know about different medical things to look for, stuff that's going to happen over the course of development. We also know what that means in terms of other people in the family. Right. So there are conditions. I mean, Fragile X is hereditary. That's a particular one. There's other conditions as well where it's going to give us ideas of things that we want to be watching, whether it's about how that person's going to communicate best stuff we know about people's language with that kind of condition, medical stuff that's going to come into play, psychiatric things that may involve repair likely over time. So it does help us, but it's helpful, I think, to talk with families about why genetics is important and what we might find and what we might not.
Dr. Melanie Penner: [00:34:00] Yes, exactly what to expect.
Dr.Yona Lunsky: [00:34:03] There's one other again, thinking about adults and thinking about what people are talking about these days. It is important we can talk about what we're doing with our young children and our families when we think about genetics and autism, certainly things that I've read or that I've learned from autistic adults talking about this, there's a real fear around that. So if we look at, for example, how we understand genetic screening in another disability, so in Down's syndrome, we can actually test that prenatally. And what that's done, and especially in terms of how we counsel people when we notice that prenatally is sometimes there's an option or even sometimes in how we explain it and encouragement, you know, to abort that fetus. Right. So there can be fears or concerns around why are we doing genetic testing in autism? So people don't understand that it might be to help understand if this is the underlying cause. Here's some good things we could do to help address some of the things that might happen with that underlying cause. So it can feel like, well, we are doing that screening or we want to understand more about genetics because we're trying to not have autism or autism is wrong or autism is bad or this is something we want to get rid of. So it sends a certain messaging for people who are working really hard to take pride in who they are, about what we think of that condition. So with everything we talk about, I sort of hear this sort of perspective around working in the child area. And then I think, well, how is that perspective different when we're working with adults? And I think as people who may work both with children and adults, to have that recognition that something that makes so much sense for one group may have different sort of implications or meanings for another group and to be sensitive to that.
Dr. Melanie Penner: [00:35:33] Mm hmm.
Alex Raben: [00:35:35] Yeah, for sure. And just I mean, even in this room, we don't have all groups represented at the table in terms of this discussion. I think we should acknowledge that as well. But we are doing our best to keep that in mind with all of this. And it's a perspective I didn't think of with respect to the genetic testing and how that could be interpreted by someone who identifies as autistic. At this stage, though, it sounds like from what you're saying, the genetic testing is not diagnostic. However, it can be helpful in terms of treatment decisions down the line for people with autism spectrum disorder. Using that as a launching pad. Perhaps now we should turn to treatment and how we can help people who are suffering with autism. We talked a little bit about comorbidities. We've talked a little bit about some of the particularly distressing symptoms. And so we have a starting place, I imagine, of targets for treatment. But if we think broadly, what are the general considerations here when we're trying to help people with this condition?
Dr. Mitesh Patel: [00:36:49] I think one of the the main challenges in working with individuals who meet criteria for autism is that it can be immensely difficult for them to navigate the world. And as they enter adulthood and something I see a lot in adults, is there social determinants of health are so much poorer than others potentially. And there's a large prison population that may meet criteria for ASD or autism spectrum disorder and just haven't undertaken the diagnostic testing because they didn't come from a family that could have questioned that diagnosis. I see a lot of children at the Children's Aid Society of Toronto that may meet criteria, but again, until they've come into care, haven't had that opportunity to potentially undertake assessment. There's lots of homeless youth who meet criteria for this diagnosis and they face incredible challenges trying to figure out applications for housing money. Many of them are targeted and preyed upon by predators who are either after their money most often. And there's also a sexual predation upon this population. And so it can be immensely difficult for these individuals. And so when we think about treatment, I think it's also important to think about what we can do to help intervene and assist individuals. And many of these individuals are our highest-risk populations. And so when we think of high-risk youth, when we think of high-risk adults, this neurodevelopmental community in particular comes to the forefront in many instances because they are facing very unique challenges, and they they can often become targeted by others, something we haven't really talked about much. And maybe I'll start the treatment discussion. There is what we see a lot of in clinical practice, especially if you're a child psychiatrist.
Dr. Mitesh Patel: [00:38:38] One of the main things you see is conduct disorder amongst youth. And so when you have an autistic child who comes in with some conduct sort of behaviours, it's often because of what we call poor frustration, tolerance, which is having difficulties understanding all the frustrations that they might have or understanding what's going on around them. And so if you don't have the same kind of perspective on the world around you as others might expect you to have, obviously that's going to be super frustrating. Right. And for some of these children, it can be difficult to let out that kind of frustration. And other people might get hurt when they try to let out their frustrations. So some might behave in an aggressive manner or a hostile manner to let out some of that pent-up energy or pent-up frustration. And so oftentimes that's the focus of treatment, is how do we target these behaviours that are of major concern. Potentially others might be getting hurt in the home or that child might be hurting themselves. Did what we call self-injurious behaviours or SEB that happens predominantly in this community in terms of Seb in general and there are treatments for that. A lot of it is behavioural therapy. There are some medications that can be tried as well that have been shown to have some benefit. But I think it's really important to focus first and foremost on what we can do to help assist that individual navigate the complex social array that we have before them, depending on their age of development.
Dr. Melanie Penner: [00:40:03] Yeah. Some of my sort of first principles around thinking about treatment goals are thinking about what gets in the way of everyday life. So what that question of function and I think in the past a lot of autism treatment was focussed a bit more on the idea of removing autism or making the autistic person look normal. And so treatment could be focussed on things like getting rid of hand flapping, even though that hand flapping in and of itself may not be harming another person or harming that person. And so I think increasingly the goals of various types of treatment are starting to move towards an idea more of improving function. And with that, I think there's also an emphasis on goal setting. So what is what are that family's goals at this moment as they get older? What are the child and youth goals? And then what are the the young adult, the adult schools to work on? Because I think if you're starting from that place of what does the family really want to work on what's going to or that does the autistic person want to work on? That's going to make the most difference in their day to day life. I think that's where that's where we're going to do the most good.
Sabrina Agnihotri: [00:41:35] And what does family involvement look like in the paediatric world versus the adult world in terms of treatment goal setting?
Dr. Melanie Penner: [00:41:44] I think ideally, it's it's a continuum of change as according to the autistic person's sort of developmental, you know, level at that period of time. So we would want to see, you know, some degree of things of enhancing and encouraging as much independence as is sort of reasonable in that situation. Certainly when they're really young, obviously it's a lot of talking to parents. When I'm seeing adolescents, I am trying to do more of that. You know, let's kick your parents out for a bit if that's if that is kind of developmentally appropriate. And I'm going to ask you to tell me what your medications are. I'm going to, you know, ask you about how school is going. And the disclosures that I get during those times are really, really important. And so I think sometimes we think about it in kind of a stepwise fashion, but ideally it's more of a continuum.
Dr.Yona Lunsky: [00:42:56] Yeah, I think one of the big differences is that when we're doing our adult based work, we sort of forget all that stuff around more family-centred care. That's so obvious in terms of our training when we're working with children. So kind of finding that balance in adulthood is really important. And certainly from a family perspective, you know, whether it's an adult sibling or parents, they will talk about how it feels to not be included in care decisions. So if I am not the best person at articulating, you know, a full context of a situation and people are only listening to my story or I'm not very good at remembering something that happened in my therapy session, for example, or just reflecting on memory of when certain behaviours or symptoms were going on. When I'm giving a history, then the clinician doesn't have all the information, but sometimes I think families are kind of left out of that because we have a sort of model of how we work with adults. So we have to figure out how we blend those two models in a respectful way as possible, sort of promoting autonomy and independence, but also a little bit of interdependence and sort of seeing where that is.
Dr.Yona Lunsky: [00:43:54] I think it's easy for us to do that with kids. It's harder for us to figure that out with adults, and sometimes people don't share the same perspective. So like, I don't want you to talk to my parents because actually I'm really mad at my parents right now and they don't understand me. I understand me. So how do we respect that with a young adult or an adult, but is there something kind of to learn from that? And sometimes I think therapeutically, if you can sort of help that person potentially appreciate or better understand why they don't want the conversation to happen with family, that could be really informative and there could be something they can learn as a family together if you can sort of bring people together around some of that stuff. So don't shy away from it. I think just because it seems like you're supposed to work in a certain way based on that person's age.
Dr. Mitesh Patel: [00:44:36] So I tend to work primarily with children who have lost their families or there's been a there's been so, so many challenges within the family that it's fallen apart or their supports have fallen apart. And I think there's three main issues that that come up with that. So the first is a lack of support for those family members that it can be immensely challenging to have a child with special needs that requires so much more attention than other children in the home, for instance, it can lead to immense amounts of frustration, substance abuse challenges, involvement by external agencies, investigations, etc., etc. And it can be immensely challenging, particularly if the child engages in externalising behaviours or ends up getting into trouble with others or there's legal involvement. The second thing is around Psychoeducation, so really understanding what the needs of their child are, and that is do I understand what kinds of resources this child will need as they move forward? And the third is a lack of infrastructure, actually, and I don't say that lightly. When I see a homeless youth, for instance, it is immensely difficult to identify what kind of dedicated services are actually going to be available for that individual. Many of the services we have, they're dedicated and designed for people who can interact well with that system, who can actually advocate for themselves or say, Hey, this is what I want.
Dr. Mitesh Patel: [00:46:04] You know, I've got this odious application. I need to get it filled out. I'm going to go find the doctor to get this done. You give a form to an autistic individual has no understanding of what that involves or how they would go about booking an appointment or try to get someone on board to maybe assess them and fill out a form that is so challenging. And our system just isn't really well designed for that. And so I see a lot of youth in shelter where we're scrambling to get as many workers on board to help them. Some of these frontline workers do amazing amounts of extra work just to help these kids out and these youth out. And you. I think it's it's always surprising to me when I bring other people into a shelter setting just to see how many of these youth have developmental challenges or meet criteria for autism and are now homeless and have lost all their family supports. And you just see this look of complete concern on almost every worker's face because we don't know what to do and people are trying to get them as much assistance as possible. And it is difficult.
Alex Raben: [00:47:12] It's it strikes me that we often talk about the biopsychosocial model in terms and approach to treatment of various kinds of conditions in psychiatry and in medicine in general. And I think almost everything we've mentioned so far has been in that social category. So it's almost in reverse, the social psycho-bio approach, perhaps. And, you know, in terms of that social bucket, what I've heard from you guys is understanding the goals, both from the family's perspective and the individual's perspective, working with families to ensure that they are involved in care, but also that the system surrounding them is supporting them in order so that they understand what's going on, so that they don't feel overburdened, which could lead to the ultimate outcome of that individual becoming homeless or not really having that family support and further social determinants of health worsening from their. So that really stuck out to me. I'm wondering if there's anything else in that bucket we should be discussing in terms of what a learner might want to know in terms of helping people with this condition, or if that or if it's a bit too hard to know the specifics around that, because I often find that with social with the social bucket is you need to know very minute services in your area. So I'll just leave it there if there's anything else in social we should cover. But then I was thinking we could move in more specifically to psychological and biological interventions as well.
Dr.Yona Lunsky: [00:48:49] I think just to mention on the social side that there are a lot of we talked about a lot of the problems and a lot of the challenges, but it also means there's a lot of things we can do. So we can if we can set up infrastructure that makes a big difference. If we can give either that autistic person social supports, that match what they're looking for or their families, that's really important. There's again, we've talked about the sort of movement for, I think, both youth and adults in terms of feeling like they belong somewhere and connecting with other people who see things the same way they do. So there can be a lot of power in terms of peer-based kinds of supports and connections, and sometimes that's in person, but sometimes that's virtual. So there's a lot of support that people connect with through technology. So understanding, for example, a young person who's spending a lot of time gaming and thinking about how problematic that is, but if there's a whole community of people playing that game with them that they can only connect with through that game, that's actually a really important social support for them. So we have to think about that. Or there might be for adults a way of sort of communicating, reading, talking about their experience, and they might be doing that through Twitter, for example, or through Reddit or so, kind of recognising that there are things we can do socially and also in terms of meaning poverty. You talked about housing, which is obvious, so huge, so important, but also having something meaningful that you do during the day. So some of our treatments are really trying to figure out how we can give things for people to do that, make them feel good about themselves, and that gives them meaning. So it's a really important part of intervention.
Alex Raben: [00:50:16] Right? So not forgetting those sort of low-barrier ways we can improve, potentially improve people's social lives by acknowledging the groups that they can find and connect with online or in person in addition to broader social programs to help with housing and poverty. I think that's very important. That said, I'm wondering in terms of psychological treatments, what is available for people with ASD.
Dr. Melanie Penner: [00:50:39] So yeah, so I think the most commonly discussed form of therapy is ABA or Applied Behaviour Analysis. And ABA I guess similar to autism is a very broad term that covers a lot of stuff. And so I would say some of the core elements of ABA are that it sort of works with the idea of motivation and how you keep people motivated to learn skills that might be more challenging for them. But there is a lot of breaking things down into very small component parts and then teaching them sort of one piece at a time and a lot of repetition built into that. And it's done. It's supposed to be done in a in a somewhat systematic way, often involving some data collection to sort of track progress. And the evidence base is interesting. So there was a recent meta-analysis that was published of different early interventions for autism, and they actually found that the quality of evidence for many of these ABA programs is not that great. So very little in the way of randomised controlled trials. And this is it's hard to study these types of interventions in a very, very rigorous way in the types of study designs we see when we're doing, you know, double-blind, placebo-controlled drug trials, for instance. But I do think that that it is it does pose a challenge to the research community to think about how we can generate the best possible evidence, control for bias as much as possible to generate the type of evidentiary support that we ideally would like to have for these interventions.
Dr. Melanie Penner: [00:52:45] In that meta-analysis, the sort of standout that had the best evidence supporting it was something called naturalistic developmental behavioural interventions or NDB models. And we have so many abbreviations in our world, as you can probably tell, and this is sort of the newest sort of iteration I think, of where ABA is and is going where so. Naturalistic refers to applying the intervention in the child's natural environment. So taking it out of a very clinical space, because when it's done in a clinical space, then you have to the child has to then make the leap to applying those skills than in their regular environment. So the idea is by applying the teaching in their regular environment, you eliminate that step developmental. So the RD in MTBI refers just to the fact that we're thinking about the developmental domains and the developmental skills that were kind of wanting to focus on at that age. And so again, previous models were maybe a bit more focussed on kind of table-based tasks, academic type tasks. And these NDB models are starting to move a little bit more into saying, okay, like what are the domains in terms of social interaction, in terms of communication that we want to work on? The behavioural reflects that this is still like a behaviourally based model. So that's that is the kind of I would say where the field is sort of going with those types of interventions.
Dr.Yona Lunsky: [00:54:37] Just to add from psychological thinking and about adults that we would be thinking about different things for adults, we wouldn't be thinking so much. What are the interventions for autism psychologically? But we might be thinking, what are the interventions for depression or for anxiety? And, you know, it's we're in an earlier stage because most of the research done on autism is done on kids. So it's much less done on adults. But we are learning that many of the things that we do in the general population might also have some use in terms of psychological interventions, especially if that person, for example, has speech and is able to do a more psychological kind of therapy. But there are certain things we might want to shift or change. So and again, Autism's, not everybody does well with the same thing. So one person might really appreciate the sort of scientific inquiry or approach that you use sometimes in CBT, where you take a thought and you think about it and you look at the evidence, but someone else might find it incredibly impossible to capture what an automatic thought is.
Sabrina Agnihotri: [00:55:36] Can you give us a few examples of the more biological treatments?
Dr. Mitesh Patel: [00:55:39] Yes, in a lot of the work that I do focussed around youth who are facing some challenges, some of that can be externalising behaviours and so we may treat that with low dose third generation antipsychotic medications. Abilify has shown some evidence in that regard.
Alex Raben: [00:55:57] And by externalising behaviours you mean things like aggression.
Dr. Mitesh Patel: [00:56:01] Yes. Or even self-injurious behaviours. Yeah. There is some evidence as well for using some other agents related to opioids for self-injurious behaviours. That evidence is somewhat limited. It's a difficult area to treat, but as I've indicated, as has come up here before, many of the symptom concerns that come forward are related to mood and anxiety. And so when we've exhausted psychological approaches and social approaches to treat these underlying issues, we may turn potentially to biological agents. And in that case, we are looking at typical agents that we would use in others, including SSRI medications or other antidepressants. This is in my practice, it's not a population that I typically use benzodiazepines, and I have a very not good experience. And I wouldn't do that anyhow with youth. But even in adults, I find that it's just it's not it doesn't have the same effect even in short-term cases. There's a lot of looking at what the comorbid symptoms are. Is there a poor sleep? Is melatonin going to work, for instance, just to facilitate some improved sleep? And if that happens, is there improved mood and anxiety symptoms? Usually that's the case even when it comes to aggression and hostility. We look at those things as well. There is a specific population that may have certain focussed sets of interests and even engages in some sexualised behaviours which isn't overly common, but it can happen. And so sometimes we look at some medications to help with that too. But I don't want that to be the focus of this and I don't want people to walk away thinking that that's what we're treating for and that's what we have to do. These are very specific cases and I think the rare cases, but I think for some of us that practice in certain areas, we end up seeing so much of one thing that we start to think like, Oh, maybe this is more prevalent than we thought. But no it's not.
Dr. Melanie Penner: [00:57:45] Yeah, I would say the one well a couple I would add , ADHD commonly occurs with autism. And so we have a lot of kids who are and teens and probably adults who are started on ADHD medications, so stimulants. Alpha agonists. At a max teen. And the other thing to think about from the biological sort of component is co-occurring medical conditions. And so there I think we have to be thinking about. Seizures, which we know frequently occur in autism. Sometimes side effects of seizure medications have a big impact on the presentation that we're seeing. Constipation. I don't think I'd be allowed to be a paediatrician and be interviewed here without mentioning constipation. So but, you know. That's something that you can make you very irritable thinking. Thinking about, particularly for autistic people who don't have the best ways of communicating with us. I think we need to be extra careful that we're not missing things. And so one of the one of the toughest cases in our clinic was a dental abscess that that had been missed. And that was a big source Of pain. And so those are the things that you just don't want to miss. Right. So it's important not to just chalk up the behaviour to autism. But to make sure that you're, you're doing a good review of systems as well to make sure that those medical co-occurring conditions are considered too.
Dr. Mitesh Patel: [00:59:36] That's immensely important, particularly in autistic clients, especially those that don't have the ability to communicate. In fact, they can't tell you if they're experiencing pain. And so oftentimes in psychiatry or child psychiatry, we're working very closely with paediatricians to have the child undertake a fulsome assessment. Even the dentists will get involved to look for this kind of thing, which is why it's so important to have these multidisciplinary teams working together for these clients, which also presents infrastructure challenges because it can be difficult to get all these players around the table in the same place for some of these youth.
Dr. Melanie Penner: [01:00:16] And I think often it's a virtual table that we're talking about. Right? And it does. I think the issue comes. In sort of who's running point on this, who's coordinating all of this information, synthesising it, making sure that all of the boxes are checked off? Because you're right, it's we don't have infrastructure such that everyone sort of sits around the same table to discuss these cases. So there's a lot of behind the scenes work, I think, that probably all of us are doing to coordinate things for our patients.
Alex Raben: [01:00:55] So there's a lot there. I'm going to because we've come closer to the end of our time together. I'm going to try my best to summarise the treatment, but there's a lot to summarise. But I think, as I was saying in the beginning, it sounds like it's an almost reverse social psycho-bio approach with social considering factors of social determinants of health, large issues like poverty and homelessness, but also considering the person's social circle, their family supports and ensuring those are as healthy as they can be to support this person in the psychological pathway. We have ABA applied behavioural analysis and this is a behavioural type of therapy that works with positive reinforcement to help with the core deficits that relate to ASD, such as social reciprocity and things of that nature. And then the last section is biological interventions, which from what I was hearing, really don't target the core symptoms if you will, of ASD.
Alex Raben: [01:02:04] But rather target the comorbid psychiatric conditions and medical conditions. And it's important to recognise both and recognise that there could be overlap that a biological or a medical condition may be causing a psychiatric or mimicking a psychiatric reaction. Leading that person to be aggressive, for instance, and that we do have some medications that help, such as atypical antipsychotics that can help with externalising behaviours and then SSRIs if there's a comorbid depression. I also heard the subtext was that no one does this alone. This is a team working around this individual, ideally a team of professionals, and that's not necessarily an easy team to coordinate all the time in our current health system, but one that is paramount to the treatment of people with this condition.
Alex Raben: [01:02:59] As sort of a last hurrah, I'm wondering if you guys have any resources you would recommend for clerks or early residents that would allow them to delve a bit deeper into this topic.
Dr. Mitesh Patel: [01:03:14] Autism Canada.org has a ton of information. I think that's a good place to go but also just I think reading from Journals and seeing some of the newest information that comes out, it's also very helpful and getting a lot of clinical exposure. I think that's the main thing is if you can shadow or do an elective or do a rotation in some of these areas, we haven't talked too much about dual diagnoses, but that's a big area to do this in. And I think you'll find across psychiatry, many practices end up working with individuals who have autism or diagnosed with it.
Dr. Melanie Penner: [01:03:52] I think my advice is to actually seek out first-person accounts of autism. I think that's where some of my best sort of hidden curriculum learning has happened. So, you know, there is a very rich, nuanced discussion of autism happening every day on Twitter. There are lots of books written. So Yonas mentioned Temple Grandin. One of my favourites is Look Me in the Eye by John Elder Robison. And then for a really nice sort of overview of the history and kind of politics and sociology of autism. The book Neuro Tribes by Steve Silverman is excellent. Great.
Dr.Yona Lunsky: [01:04:46] I would actually echo a lot of I think recognising different people are looking for things at different times, but so important, I think, to understand people's experiences themselves. And also if you're interested in supporting families, understanding also families experiences and being familiar with the different stories because there isn't just one. And so it's helpful to understand the perspective of autistic adults, the perspective of parents or siblings, of people who are autistic at different ages from different times. The more you can read, the more you can learn, right? And the more you see people and interact with people, I think is also I mean, there's even a huge difference that people who are listening to this right. Now, who are clerks or early residents, were brought up at a different time than I was in terms of who was in your school and who was in your neighbourhood, right? So that's already making a difference is probably people, you know, that you can talk to. I think that could be really helpful as well.
Dr. Mitesh Patel: [01:05:36] I just want to echo that Look Me in the Eye book that was actually required reading for me during my residency by one of my supervisors, and I'm so glad he pushed for that. That was at the Maples Institute in Vancouver, which is a Child Custody Centre and Youth Forensic Centre. But it definitely helped to, I think, educate me a lot about the perspectives. And yeah, I think there's so many things to do. There's movies to watch as well. Yeah. So I think there's lots of ways about learning about this, right.
Alex Raben: [01:06:06] And now a podcast episode. Thank you guys so much for being here. We really appreciate it and for taking us through various aspects of autism spectrum disorder and for giving us some resources to move forward with. So I just want to thank you all again and thank you guys for listening. And we will. Talk to you next time. Bye bye.
Alex Raben: [01:06:35] PscyhEd is a resident-driven initiative led by residents at the University of Toronto. We are affiliated with the Department of Psychiatry at the University of Toronto, as well as the Canadian Psychiatric Association. The views endorsed in this episode are not intended to represent the views of either organisation. This episode was produced by Weam Sieffien, Gurnaam Kasbia, Sabrina Agnihotri and Alex Raben. This episode was hosted by Alex Raben and Sabrina Agnihotri. Audio editing by Jordan Bawks and Alex Raben. The accompanying infographic for this episode was created by Weam Sieffien and Nikhita Singhal. Our theme song is Working Solutions by Olive Music. A special thanks to the incredible guests Dr. Melanie Penner, Dr. Yona Lunsky and Dr. Mitesh Patel for serving as our experts for this episode and providing us resources for our show notes. You can contact us at podcast at gmail.com or visit us at Psych podcast dot org. Thank you so much for listening!